{"id":1252,"date":"2016-06-24T14:08:02","date_gmt":"2016-06-24T19:08:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1252"},"modified":"2016-06-24T14:08:02","modified_gmt":"2016-06-24T19:08:02","slug":"donna-marie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/06\/24\/donna-marie\/","title":{"rendered":"INDIVIDUO CON LGMD: Donna-Marie"},"content":{"rendered":"

06\/24\/2016<\/p>\n

Intervista a riflettori accesi sulla LGMD<\/p>\n

Nome<\/strong>: Donna-Marie \u00a0 \u00a0 \u00a0Et\u00e0<\/strong>: 32 anni\"LGMD2i<\/a><\/p>\n

Paese<\/strong>: Regno Unito<\/p>\n

Sottotipo LGMD<\/strong>: LGMD2i<\/p>\n

A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>:<\/p>\n

Ho fatto i test a 12 anni, ho avuto una diagnosi di distrofia muscolare a 13 anni e il sottotipo qualche anno dopo.<\/p>\n

Quali sono stati i primi sintomi<\/strong>:<\/p>\n

Generalmente ero pi\u00f9 lento degli altri bambini durante le lezioni di educazione fisica. I miei insegnanti si accorgevano che non riuscivo a tenere il passo, ma sapevano che ero troppo una santarellina e che dovevo impegnarmi al massimo!<\/p>\n

Avete altri familiari affetti da LGMD:<\/strong><\/p>\n

No, sono 100% unico J<\/p>\n

Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>:<\/p>\n

La sfida pi\u00f9 grande per me \u00e8 l'impatto mentale; so di essere fortunata con la mia LGMD e che potrei avere problemi molto pi\u00f9 gravi, quindi cerco di non lamentarmene troppo, ma per un paio d'anni ho desiderato nascondermi dalle persone che mi guardavano e dalla mia zoppia. Il mio ragazzo da 4 anni ha cambiato il mio atteggiamento nei confronti della mia disabilit\u00e0 pi\u00f9 di quanto avrei mai potuto immaginare e, sebbene non mi interessi pi\u00f9 che la gente mi guardi, a volte faccio fatica quando usciamo perch\u00e9 mi sento in imbarazzo per lui quando la gente ci fissa e sento che dovrebbe stare con una persona \"normale\" alla sua et\u00e0.<\/p>\n

Odio anche il fatto che non posso andarmene durante una discussione, soprattutto se sono seduta su una sedia bassa, ah ah!<\/p>\n

Qual \u00e8 il suo pi\u00f9 grande risultato<\/strong>:<\/p>\n

Mi piacerebbe dire che il mio pi\u00f9 grande risultato ha a che fare con la carriera, ma devo dire che in quel campo non ho molto di cui vantarmi. Ma trovo che sia una conquista il fatto di riuscire ad andare avanti e a rimanere positiva. Ho una carriera modesta, ma continuo a lavorare e a socializzare. Non cerco pi\u00f9 di nascondermi sentendomi come Quasimodo!<\/p>\n

In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi:<\/strong><\/p>\n

La LGMD mi ha reso grata per le persone straordinarie che ho nella mia vita. Non potrei desiderare una famiglia, un partner o degli amici migliori.<\/p>\n

Cosa volete che il mondo sappia della LGMD?<\/strong>:<\/p>\n

Vorrei che il mondo sapesse che la LGMD non ha effetti sul mio cervello o sui miei occhi!<\/strong><\/p>\n

Non ho bisogno che mi si parli come a un bambino e posso vedere le spinte, i sussurri e gli sguardi. <\/strong><\/p>\n

\u00a0<\/strong><\/p>\n

Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>:<\/p>\n

Ci sono cos\u00ec tante cose che potrei elencare qui, ma la verit\u00e0 \u00e8 che penso che la prima cosa che farei \u00e8 uscire e festeggiare con tutti i drink che posso gestire e non preoccuparmi che se cado, rimango gi\u00f9! E magari ballare in qualche locale J<\/p>\n

Ma dato che la risposta \u00e8 stata piuttosto insulsa, vorrei aggiungere che dopo andrei a fare una bella vacanza con il mio ragazzo e la mia famiglia, dove nessuno di loro deve preoccuparsi se il terreno \u00e8 troppo irregolare o se ci sono gradini, o se non posso camminare sulla spiaggia o entrare\/uscire da una piscina o alzarmi da una sedia.<\/p>\n

 <\/p>\n

Per leggere altre \"Interviste Spotlight LGMD\" o per proporsi come volontario per una prossima intervista, visitate il nostro sito web all'indirizzo: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"

06\/24\/2016 LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Donna-Marie \u00a0 \u00a0 \u00a0Age: 32 […]<\/p>","protected":false},"author":1,"featured_media":1251,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1252","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Donna-Marie - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/06\/24\/donna-marie\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Donna-Marie - 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